father with little kids needs advice

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imaayafa

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my husband was diagnosed with seizure disorder 2 months ago, following his first grand mal. he may have had petite mals all along, not clear. an MRI shows from a previous head injury scar tissue on the left frontal lobe and left thalmus (as i understand it). they said that he is at risk for further seizures because of this and put him on tegretol.

my question:
we are not sure how to handle the child-care issue. my husband takes my 2-year-old son sometimes to daycare in the stroller. we have tied a scarf to the stroller which he ties to his hand in case (god forbid) he has a seizure when out and about, bc it is extremely hilly where we live and there is a lot of traffic and the fear is that our son could roll into traffic or fall on his face.

but what about if they are out walking together....i have this fear that if he has a seizure that my 2-year-old will run into traffic.

the doctor said that we can't stop living our lives and just have to decide ourselves about what the biggest risks are. we also feel thta i (the mother) can't take over all the child care day and night because of such fears.

do you all have any advice about what is the safest way for an epileptic parent to be out and about with small children? we have a hyper and wild 2.5 year old and a wild 4.5 year old, both who love to run away if we don't grip their hands. we also live up 76 steps, for the time being.

thanks so much.
 
I have numerous petit mal (partial) seizures & in 49 years I don't think I've ever dropped or let go of something I'm not supposed to (dropping things from regular klutziness is a different story). Please don't assume your husband will leg to of your childs hand or carriage if he hasn't yet or there's no reason to. Do be careful (like with the scarf) but be careful not to assume your husband will automatically be responsible for a disaster due to seizures as much as you're careful to prevent one.

I've found that many people react to my seizures trying to be helpful but also assume that I'm more helpless than I am and that can be condescending. While being cautious, be careful not to assume the worst when things probably aren't that bad.
my :twocents:
 
thank you for your quick reply. i'm sorry i wasn't more clear. i'm not concerned about the petite mal seizures when he is out. i'm concerned because 2 months ago he had a major seizure and was unconcious for two minutes. from standing to the ground he fell and broke his tooth, his rib, and gashed himself in several other places. obviously if he had been holding a child or pushing a carriage or was holding the hand of a child in public, it would have posed a risk to a small child. the doctor said it could happen again, though the risk is now lower bc of the tegretol.
 
I think the main thing to do is to be aware of how the tegretol (also my drug) effects him. I've had to do this every time the doc tries a new AED. Some of the side-effects can be: less observant, sleepy etc. so you both should watch to be aware of them. Once you're both more comfortable what the effects of the drug are & how it's helping/effecting him and his seizures, I think you'll instinctively know what's safest.

Meanwhile do you feel you should to talk to the kids & let them know the possibilities of what might happen & how to react?

I do agree with your doc though, you can't stop your lives for this. As for the 76 steps you live up..... that's just hell whether someone has seizures or not.
 
imaayafa said:
the doctor said that we can't stop living our lives and just have to decide ourselves about what the biggest risks are. we also feel thta i (the mother) can't take over all the child care day and night because of such fears.

do you all have any advice about what is the safest way for an epileptic parent to be out and about with small children? we have a hyper and wild 2.5 year old and a wild 4.5 year old, both who love to run away if we don't grip their hands. we also live up 76 steps, for the time being.

thanks so much.
Click to expand...

Imaayafa,

I've had epilepsy for years, and have had TC seizures while raising two children, often times alone because my husband at the time was a pilot. My son was also hyperactive when he was young, so I had my hands full, too. When I felt it was necessary, I would ask friends or neighbors to help me with the kids or have an older teenager come over and give me a hand once in a while. If your husband has "auras", he will certainly know when he needs to get the kids to a safe place. Hopefully, the medication will stop the
TC seizure so he can live a peaceful life.
 
hahaha yes, the stairs are crazy, indeed. especially with the stroller.

did the side effects of the tegretol wear off in your case?

he was initially on tegretol and clomex and he was the most groggy, sleepy, zombie, detached, careless and confused i had ever seen him. (and raging headaches). none of our doctors ever heard of hte interaction with grapefruit either and by coincidence i had bought my first container of gf juice in years and he had some. probably didn't help.

the dr since took him off the clonex and he seems much better.
but since he has broad pre-existing neuro issues it is hard to tell what is that and what is a side-effect of the med...

i would love to talk to my kids but at their age/particular personalities i'm afraid they won't understand. i am not sure exactly what to tell them, either. i guess to stay by his side until he wakes up is the most important thing. they are 2 and 4. do you have kids?
 
cint thank you for your message. what exactly is tonic clonic? you always know when you are going to have a seizure? when my husband had his first major one he woke up from sleep and walked into the living room smiling (acting like he was sleep walking) and turned aorund and then just collapsed in a thunderous boom (stone floors). later he said that he felt suddenly like he had just run a marathon and had never been so tired and exhausted and couldn't breath. is that like an aura? i hope to god you are right that he can feel it if god forbid it happens again. i also tip my hat to you for raising 2 wild ones under such conditions.
 
when I started I was also on other medications-mysoline, dilantin & valproic acid. I swear I don't remember much from high school because of it.

When I was taken off the others I found the effects of tegretol to be much less. I am still a bit forgetful & often mentally tired but I function much better.

I didn't learn about the grapefruit until I was on it for about 35 years. Something else I was told was not to take it on an empty stomach because it can cause ulcers or heartburn with long term use. (I'm lucky there).

I don't have any kids (at least that I know of) but I've had a few stepkids & I'm a really proud uncle.
 
Tonic clonic seizure is also known as grand mal seizure. I usually have an "aura"- a foreboding feeling right before the seizure. For me, it is usually the voices become so loud I cannot stand it anymore, the lights become dim and I feel like I am spiraling into a blackhole.
 
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imaayafa said:
i would love to talk to my kids but at their age/particular personalities i'm afraid they won't understand. i am not sure exactly what to tell them, either. i guess to stay by his side until he wakes up is the most important thing. they are 2 and 4. do you have kids?
Click to expand...

I have T/C seizures. I appriciate being afraid for your children. My daughter is now 12. When she was 2 I used a harness or stroller if going out by myself. By the time she was 4 we had system in place she knew that if I was having a seizure she was to sit down and wait for the "safe" people to show such as EMT's, police, firefighters. This was repeated often and we even did seizure drills in the same way that you would do fire drills. We were also lucky because my daughter had the chance to check out an ambulance in the parking lot of our mall. The EMT's were really good about telling her what they would do if I had a seizure. The more information they have the less likely they are to get scared if/when it happens. My daughter has been amazingly resilient and on the few occasions where she has had to deal with my E in public she came through like a trooper!
Live life!
 
thank you seizingbeauty.
when you say the safe people...do you mean that an ambulance or emergency workers were called every time you had a seizure? should one call an ambulance?
i am realizing that i don't know what i'm supposed to do if my husband has another grand mal seizure. it was my understanding that the only real danger is if you hurt yourself falling down, is this correct?
you have given me food for thought about our 4-year-old, maybe we should also do drills.
also, when you say a harness, do you mean like a leash? or do you mean a carrier strapped onto your chest? my little one is over 15 kilos already and way to heavy to carry for more than a few minutes at a time.
 
It istrue that you don't need to call ambulance unless your husband has an injury during the seizures, or if the seizures go on too long. But since small children can't always make a judgement about how severe the situation may be, the default for them should perhaps be to call 911 or a neighbor.
 
Hello, imaayafa,

Things will be okay with your husband taking care of the children. The four year old is definitely old enough to go through some simple drills. If your 2-1/2 year old is walking, there are baby harnesses to keep him with his dad. They are really cute, with backpacks that look like moneys or puppies. Your 4-year-old wouldn't put up with it, though.

http://www.amazon.com/s/?ie=UTF8&ke...=aps&hvadid=2953625301&ref=pd_sl_518vf9ooq6_b

If he's in her stroller, you can get one of these - a Ugo. It is a stroller that automatically stops when more than a couple of feet away from the parent:

http://www.gizmag.com/ugo-brings-strollers-to-safe-stop/11826/

I have no idea where you can buy one, but here's a link to the company's website. A few emails to them or a look in their online store should yield results: http://store.yankodesign.com/
 
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thanks so very much to all for the wonderful advice and the links. will definitely look into a harness, though i have never seen one and we will be the talk of the town...
 
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